Background: Chronic Obstructive Pulmonary Disease (COPD) is the fourth leading cause of death in the world. COPD is a progressive disease that could lead to chronic hypoxemia, which requires treatment as domiciliary Long-Term Oxygen Therapy (LTOT). There is a need for increased knowledge about self-care strategies used by individuals living with COPD and LTOT. Objective: The aim was to explore experiences and self-care strategies in patients living with both COPD and LTOT. Sample: The sample consisted of five men and five women diagnosed with COPD being prescribed LTOT for more than one year. Method: Ten interviews were undertaken and analyzed for both manifest and latent content. Results: Living with COPD and LTOT was associated with experiences of guilt although there were doubts about what had caused the lung disease. Both the lung disease and the oxygen therapy had a negative impact on their self-image. Anxiety was expressed when thoughts about the remaining time occurred. There was a constant balance between diminishing abilities and increasing restrictions related to the lung disease and the therapy. In order to compensate for arising imbalance, self-care strategies had been initiated aimed at preserving the present state of health, enabling and facilitating physical activity and promoting a positive attitude. Conclusion: The current study suggests that individuals living with COPD and LTOT are encouraged to adopt self-care strategies directed towards maintaining stability with regard to the lung disease, the oxygen therapy, physical capability and emotional reactions.

Nursing workload according to Vårdtyngd Lund (VTL) has been registered at the unite since 1992. An earlier study showed that nurses interpreted the indicators of the instrument and the general outlines for using it differently. The aims of this study were to investigate the ability of VTL to discriminate among different patients, the internal consistency of the indicators of the instrument and the inter-rater reliability. Thirty-one nurses independently rated the workload of six patients earlier cared for at the unite. The results indicate that the instrument may have a low discriminative power. Cronbach`s alpha was 0.7. A high percentage of agreement (> 90 %) was found in 26 % of the measurements. In 10 % the agreement was very low (< 50%). The correlation measured as weighted kappa varied between 0.18 – 0.64. The results indicate that the indicators and the manual need to be developed further and more clearly defined so that the nurses can use them in a congruent way.

BACKGROUND: Knowledge of experiences from prostate cancer is sparse in a longitudinal perspective. From a nursing perspective, results from combined qualitative and quantitative studies are lacking however would present the broadest knowledge base for best practice. Present descriptions of medical-physical symptoms such as urinary, bowel and sexual dysfunction from quantitative inquiries need be complemented with qualitative results. Such knowledge is essential in relation to treatment and communication with patients over the years and not only shortly after surgery.

METHODS: A longitudinal study was formatted to investigate general and specific health quality and sense of coherence quantitative alterations over three years. A general health quality module (EORTC QLC-C30) and a disease-specific module (EORTC PR-25) were applied for the longitudinal study together with the Orientation to life questionnaire (SOC), measuring a persons' sense of coherence. In order to strengthen reliability and compensate for low participation we used the Directed content analysis for interviewing and analysis. The method allows using findings from earlier research when interviewing along with detecting new areas. Twenty-one men were followed over three years and six of them, in the third year, accepted to be interviewed.

RESULTS: We found high quality of life ratings and extended the study with follow-up interviews in year three, to investigate whether questionnaire results were in line with interview findings. We found high life quality and functioning ratings that were in line with qualitative descriptions. Interview analysis showed retrieval of life as lived before, yet in a different way, the men never forgot the diagnosis event, had a unique illness history worth hearing, and had come to terms with most treatment-related shortcomings. Sense of coherence ratings were medium to high and confirmed stability over time in comprehensibility, manageability and meaningfulness after prostate cancer treatment.

CONCLUSIONS: Over the years, the men's negative experiences from shifted into 'a good life' though in a different way than before. The interpretation is supported in the study by quantitative results showing a high degree of functioning. The men's sense of coherence seamed to support their handling of life three years after prostate cancer treatment.

Introduction: The aims of this study were to investigate: (1) the prevalence of childhood abuse in women admitted to psychiatric services in a county in the south of Sweden; (2) who the perpetrators were; and (3) the women's self-reported consequences of childhood abuse.

Method: The study had a cross-sectional design and was a part of a more comprehensive study. An anonymous self-reported questionnaire was used which included both closed and open-ended questions. The data material were analysed by means of descriptive statistics, Mann–Whitney U-test and manifest content analysis.

Results: The total number of women who participated in the study was 259, 51% of whom reported experiences of abuse during childhood, with 53% of these having been exposed to more than one type of abuse. The most frequent perpetrator was the woman's parents; mainly the fathers but also the mothers turned out to be frequent perpetrators of abuse. Some 75% of the women reported current psychological problems in adulthood related to abuse in childhood. According to a manifest content analysis, five themes of self-reported psychological problems emerged: psychiatric problems, shortcomings in social relations, poor self-confidence, fears and bad memories.

Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE. Linnaeus University Sweden and Oslo and Akershus University Norway.

Persson, Lena

Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap.

In this paper, we will discuss a study whose concern is to identify and develop areas of food distri­bution by testing a model that allows the practitioners to participate in the exploring of their own stories of everyday practice. The fundamental reason for engaging the practitioners in the research was to facilitate them in obtaining tools to reflect on practice and to inform about future actions. Our in­tention was to use PAR as the approach as to building a bridge between theory and practice for which the SDM proved to be suitable for gaining and analysing data. Some of the links between the PAR approach and the SDM are that both consist of continuous cycles of reflection and learning. The stories should be used as a powerful vehicle to discover new knowledge and to deepen the under­standing of professional practice issues. Reflection and story telling are closely related to the proces­sing of information and gaining new insights from experiences. To take stories from practitioners’ own experience is similar to that of the ‘look phase’ of PAR, which implies that what is happening is described and thus clarifies the core problem of what the practitioners would like to change. The ‘think phase’ of PAR, and the structured dialogue in the SDM, involves detailed de­scriptions, explanations and the exploring of the issues that are aggregated and focused on in the structured dialogue around questions such as: What can we do to move on; what actions could be taken; what happens if nothing is done; and what are the possible effects. Actual stories were used as “triggers” when probing questions were asked in a dialogical and structured form. The process involves the combination of having a dialogue and writing memo notes. The dialogue on various strategies, in­clu­ding weaknesses and strengths, continues until each action and the expected benefits of a chosen action have been adequately discus­sed. The dialogue has a constant focus on what is of greatest im­por­tance for a chosen action from an ethical, legal, economic, colla­borative and organisational point of view. Furthermore, the dialogue evaluation emphasises on how participants reflect on what the expected change is, how change comes about, and what the consequences of the change imply. Our conclusion is that the PAR approach and the use of SDM are suitable and systematic methods to generate data and to encourage collaboration between various professional groups, i.e. an active participation through dialogue where there are no restrictions in the communication and everybody’s voice is heard equally. In this study, as to critically reflect on how the SDM embodies a participatory and an ‘action’ oriented approach implies that, as a platform, an actual, real, case from practice was used. Chosen jointly and in agreement by the practitioners, the case should always be one with which all can be familiar and treat as their own. The starting point was our perception that the practitioners are the experts in their particular everyday work, and that they are able to identify problems them­selves, which would be resolvable through actions and changes in the daily routines. Another benefit of involving the practitioners was how their motivation to make changes to a particular problem they had deemed important to resolve increased. The systemic issues, which were identified in the study, call attention to the importance of systematic collaboration, and by using the SDM, issues that concern the organisation and its practice directly may be explored. This cyclical process provided an expanded understanding about the food distribution context. In addition, the dialogue has developed over time from focusing on formal aspects, such as routines, competence levels, responsibility and how to fill in forms, to include more organisational aspects. The practitioners felt that structured dialogues and ref­lecting gave them a better understanding about the food distribution context. The reciprocal relations that were rendered in the non-restrictive communication – down-up and up-down in PAR – were identified as important. Another important insight was that support from the parent organisation was necessary when actions were to be taken and changes in practice were to be made. In closing, the study stems from our shared deep engagement and absorption in practice and together we saw how stories unfolded. It became clear that a greater understanding of and by the various professional groups would have to be obtained in order to achieve changes in the practice of food distribution to elderly persons for which such understanding is a necessary starting point.

The purpose of this paper is to describe the implementation of action research (AR) in the context of Swedish municipal care from a facilitator’s’ perspective. Four empirical studies using the AR approach were performed during 2007–2012 in six municipalities. Establishing support for AR was time-consuming when it concerns starting up processes that were created and were changeable over time. Further, the processes were focused on the sustainable development of practice, based on practitioners’ and care consumers’ knowledge, that is a precondition of organizational change. An important precondition was that the participants were motivated and participated actively in all phases of the AR cycle. Another important precondition was that the participants got along with each other and trusted each other. The participants’ engagement and the collaboration that was established between the participants and the facilitator were likely a result of this. Moreover, even positive interaction with participants representing a “top–down” perspective was important for the implementation of proposed changes to the practice. In conclusion, AR enhanced sustainable action based on participant’s everyday knowledge relating to areas they want to change and improve in the context of municipal care practice.

This study is the final part of a larger project with an action research approach focusing on food distribution (FD) within municipal service and care for elderly persons, living at home (≥65 years), from various perspectives. The aim was to describe the decision-makers’ the politicians and top level administrative manager’s views on the FD service, and to give feedback from the results of earlier studies based on information given by FD receivers, the perspectives of involved professionals, and the results of an intervention study and further to report the decision-makers suggestions for which areas should be taken into consideration as starting points to improve the FD process and practice. Data was gathered in two steps: step 1, through individual interviews (n=12) with the decision-makers during the spring of 2009, step 2a through feedback from previous studies, received during the autumn of 2011 and step 2b from discussions based on the feedback. The interview data was analysed using qualitative content analysis. The findings indicated a discrepancy between the reality and the political visions. It was shown that decision-maker’s needed to make decisions despite their uncertain knowledge of the complexity of the FD programme. They considered what has been, what is, and will be, when setting goals. Their goal was that elderly person’s rights and needs should be fulfilled. This included freedom of choice and individual consideration. In addition, it meant, meeting elderly people’s medical and social needs. Three areas were found to require facilitation for change related to FD: 1) the monitoring of the elderly’s health and wellbeing while providing FD, 2) the increasing of professional competence, and 3) the creation of a forum for inter-professional communication. The findings in this study have implications for nursing, gerontology and public administration.

The purpose of the study was to describe the experiences of elderly people, living at home who receive hot meals that are distributed by their municipality. Qualitative content analysis was used to analyse the (n=13) interviews. The results showed that feelings of dependency, loneliness and gratitude were expressed by the participants in the study related to their meals being delivered home. Dependency was expressed as not having influence over the food products the meals were made from. Loneliness was expressed as being isolated and being confined at home alone due to difficulties getting out of the house, which was associated with the costs of taxis transportation. Gratitude was expressed by the sincere thanks for the possibility of receiving traditional meals delivered daily.

The major conclusion of the study was the indication that greater attention should be paid to meet both the practical and psychological needs of elderly people.

Findings from international research as well as from Sweden show that food distribution as a single inter­vention involves various professional groups on the various levels in organisation.

The present research is one of several Action Research projects initiated as a result of a resolution on the highest political level aiming at achieving improvements within the care and service through collaboration between different levels in the organisations.

The overall aim of this specific study is to describe the “top-down” perspective i.e. decision-makers involvement in identifying areas for the development of the food distribution chain.

Data was collected in two steps, firstly by individual interviews with decision makers (politicians n=21, one administrative manager and one medical responsible nurse) and secondly by evaluation dialogue in group (n=23) discussion. The group discussions were based on findings from individual interviews and results from two previous studies focused on interviews with various professionals and food distribution recipients.

The findings were that food distribution was seen as a multifaceted system that included three interrelated issues: the administration of work, the professional’s competence in nutrition and the relationship between various professional groups. To achieve a change, the central component of complexity needs to be clarified. When the issues are multifaceted the solutions need to regard the whole picture rather than its parts.

Findings from international research as well as fromSwedenshow that food distribution as a single inter­vention involves various professional groups on the various levels in organisation.

The present research is one of several Action Research projects initiated as a result of a resolution on the highest political level aiming at achieving improvements within the care and service through collaboration between different levels in the organisations.

The overall aim of this specific study is to describe the “top-down” perspective i.e. decision-makers involvement in identifying areas for the development of the food distribution chain.

Data was collected in two steps, firstly by individual interviews with decision makers and secondly by group discussions. The group discussions were based on findings from individual interviews and results from two previous studies focused on interviews with various professionals and food distribution recipients.

The findings were that food distribution was seen as a multifaceted system that included three interrelated issues: the administration of work, the professional’s competence in nutrition and the relationship between various professional groups. To achieve a change, the central component of complexity needs to be clarified. When the issues are multifaceted the solutions need to regard the whole picture rather than its parts.

The present research project is one of Action Research (AR) projects in a region in southern part of Sweden, Scania. All the AR projects originate as result of a decision on the highest political level. The decision was to do changes within the care service where collaboration between different care organisations should be advocated in aim to support and help care consumers. The care should be provided in more care consumer centred ways in which care consumers should be in the centre. These changes should emphasise public and care users’ involvement and participation in decisions around the treatment, service development and evaluation. The participatory service should be performed through a constructive dialogue between care users, health care professionals as a catalyst to common practice change. The overall aim of the project was to explore FD to older people living alone in their own homes from different perspectives: elderly as consumers, decision-makers and various professionals. The specific aims were: 1)to explore various professionals’ experiences in relation to their involvement in food distribution in order to get a comprehensive understanding of the organisation, responsibilities and roles in the specific context (“bottom-up” perspective);

2) to explore older people’s experiences of food distribution and their suggestions what they whish to change (“bottom-up” perspective); 3) to identify, suggest, implement and evaluate chosen actions issues together with various professionals and elderly people (“bottom-up” perspective); 4) the results from the studies 1-3 will be given as feedback to the decision-makers level and it will be start point for reflective reasoning by using Story Dialogue Method in aim to identify conditions for development of food distribution chain (“top-down” perspective).

The short paper and presentation, on how to identify the practical issues involved and what can be done to create a receptive context for change, would fit in the fourth key theme of the congress.

Background: Research focusing on Food Distribution (FD) from various professionals’ and organisational perspectivesare lacking. The aim of this study was therefore to explore various professionals’ experiences of involvement in FD inorder to get comprehensive understanding of the organisation, responsibilities and roles.

Methods: This qualitative study is a part of a larger project with an action research approach focusing on FD in themunicipal home service and care for home-living elderly persons in a municipality in southern Sweden. The data wascollected through participatory observations (n=90 occasions and in total 480 hours), repeated focus group interviews (n =4) with different professionals (n =10) involved in the FD process and one individual interview. The material was analysedby qualitative manifest and latent content analysis.

Results: The study indicates that Food Distribution is a fragmentary intervention where a comprehensive perspective andclear roles of responsibility are lacking. The FD organisation seemed to be strictly divided and limited by constraintsregarding time and money. The fragmented organisation led partly to staff only taking responsibility for their part of thechain and no one having the full picture of and responsibility for the FD process, but also to some professionals takingmore responsibility than they were supposed to.

Conclusions: The aim of the study was met by using an action research approach. The study was however limited by thatno home help officers were represented. The FD appeared as an extremely complex chain of different but connectedactivities. It is not merely the distribution of a product, i.e. the meal box. The fragmentation of FD means that staff onlytakes responsibility for their part of the chain, and that no one has the full picture of or responsibility for the FD process.Consequently, there is a need for an outline of responsibilities. The findings have implications for nursing, gerontology,and in the care for the elderly.

Background: Making changes to municipal social care and service has been found to be challenging to realise and highly multifaceted. The aim of this study was to describe how the professionals can identify needs for improvement and improve Food Distribution (FD) service for the home-living elderly people in Sweden.

Methods: This study is part of a larger project with an action research approach focusing on to municipal FD to older people living in their own home in Sweden. The professionals involved in FD invited the first author to assist them in this process. The study participants were comprised of the following groups: “The Identification focus group” that identified need for improvement of FD (n= 5); “The Action focus group” that planned and choose suitable ‘action’ for improvement (n=5); “The First Evaluation group” (n=4) that evaluated the content of planned improvement and finally “The Second Evaluation group” (n=29) that evaluated the changes following improvement. The data was gathered and analysed by Story Dialogue Method.

Results: The need to update and increase the FD recipient’s knowledge in nutrition by sending them informative letters was found to be an important area to focus on. The information letters (n=1700) were distributed to the all FD recipients in six municipalities in southern Sweden during April 2011. The results were evaluated during May 2011. The overall general estimation was that the content of the letters indicated that this was a suitable method for gaining information to make a nutrition competence update. Following this, “The Action focus group” decided: firstly, to continue preparing and distributing information letters to all FD recipients to be sent out twice a year, and secondly: to make the information letters accessible on the websites of the six municipalities and county councils involved.

Conclusions: This study showed that systematic work inspired by an action research approach with motivated and involved participants can be beneficial and a starting point for the process of change in municipal service and care practice. The major conclusion of the study was that systematic reflection over everyday practice can be the vehicle for the future change of practice. The research process and the findings have implications for nursing, care of the elderly and gerontology.

Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap. Kristianstad University, Research Environment PRO-CARE. Linnaeus University Sweden and Oslo and Akershus University Norway.

This thesis aimed at from the patients’ and the spouses’ perspective, investigate impact on daily living of acute leukaemia (AL) or highly malignant lymphoma (HML) when under, and free of treatment and their view of the nursing care received. Open-ended interviews, generic life quality (LGC), and cancer specific life quality (EORTC QLQ-C30) questionnaires, Sense of Coherence Scale (SOC), a study-specific questionnaire and an oral assessment guide (OAG) was used. In all 88 respondents with AL or HML and nine spouses participated in the studies. Results showed respondents to be placed in a state of traumatic crisis. Basic aspects were types of diagnosis, level of SOC and LGC and age, which influenced the way things developed. Severe fatigue, nutritional problems, oral complications and proneness to infections reduced their capacity to handle daily living. Psychosocial and existential strain together with economic strain and having to live in isolation became further limitations. Tangible and emotional support was obtained from the family. Care was evaluated as good but said to “be on request”. Different family types “Couple acting as a unit”, “Couple acting independently and on equal terms” and “Couple acting separately with the spouses subordinate” meant different possibilities for the spouses to be involved, support their sick partner and obtain support for themselves. The long-term consequences could constitute a danger to patients’ continued living, or an adaptation in which a balance was obtained or could mean a “new lease of life”. The outcome of the entire situation seems to depend on the basic aspects, the patient’s life goals when the disease was contracted the family situation and ability to obtain social support from family, friends and nurses.

22.

Persson, Lena

Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap.

Eighteen former patients in remission after acute leukemia or highly malignant lymphoma were interviewed about their daily life experiences prior to the diagnosis, during treatment and in their current life. The transcribed texts were analyzed from a phenomenological-hermeneutic perspective, expanded by their medical and social history as related in interviews. Living through the disease and treatment meant having been through a severe traumatic crisis that implied an overwhelming threat to their lives physically and existentially. The analysis revealed three groups, according to their evaluation of the entire experiences; Believed in life, fought for it and came through with increased strength; Life goes on, adapted to it and found a balance in existence; Life was over, felt out of control and lost the belief in life. The two first groups ascribed meaning to the experience they had been through, and evaluated it as something inevitable part of life. The third group was not through the crisis and evaluated their situation with bitterness. Their situation had similarities with post-traumatic stress syndromes. This shows the importance of offering long-term help in crisis management.

The purpose of this study was to investigate retrospectively the experience of the treatment and nursing care provided to AL and HML patients in remission, and how the disease and treatment affected their current life. A further purpose was to investigate the relationship between the patients´ previous experiences of the nursing care and their current situation.

This study showed that energy loss and nutritional problems predominate during the treatment phase. They should perhaps be the central focus for nurses in the care of AL and HML patients, because the extent of these problems also indicated the presence of other physical problems. The overwhelming fatigue hinders the patient from doing things and from physically taking care of her/himself, and may be overlooked by the nurses since the patients motor capability may seem intact. Regular systematic assessment and properly adapted nursing care may lead to early detection and nursing intervention. This, may in turn decrease the emotional strain of having a life-threatening disease. When in remission, data indicated reduced psychological and sexual energy, existential problems along with sensitivity to infections, which implies the need for systematic follow-up care, including counselling. The much reduced psychological and sexual energy and the serious existential problems together with sensitivity to infections may lead to a persistent crisis reaction. It makes sense to establish strategies for identifying and treating this syndrome within a context of comprehensive follow-up care including prior emotional adjustment, the presence of environmental support and the offer of planned counselling.

26.

Persson, Lena

Kristianstad University, School of Health and Society, Avdelningen för Hälsovetenskap.

departments take up a large proportion of health care resources, at the same time they appear to experience low satisfaction with the care they receive. The purposes of this pilot study were to describe: I) the development of a team model for taking care of frequent visitors to a somatic hospital based ED; II) Eventual changes, over six months, in costs and patients’ health care utilization related to pilot testing the model and III), the team’s experiences of implementing the model.

Methods: A mixed method convergent parallel design was used.

Results: The development of the model began as a top-down process and later on into a bottom-up approach once the inter-professional team became involved. The new model functioned as a support for all 12 patients included in the study and collectively their visits decreased by a total of 73 visits (55%).

Conclusion: The inference quality description is that a management induced project may be accepted and actively applied when those involved experience freedom to structure the project. Increased communication between different professionals within the hospital and between different caregivers such as ED, primary health care and community social- and health-care, increases the possibility for the patients to be cared for in a sustainable and non-fragmented way.

Nurse turnover may decrease the quality of nursing care due to the loss of knowledge. It also results in high costs for the employer. Hence, the factors contributing to nurse turnover, if correctly understood, are important in order to know how to reduce it. This study aimed at exploring what contributing factors nurses who had decided to leave referred to concerning their decision to resign. A questionnaire was posted to all nurses who had left within one county council and 142 nurses responded. The most important factors behind the decision to leave turned out to be the following: difficult to implement changes, lack of influence and recognition, to much weekend and evening duty as well as the psychological burden inherent in nursing. The importance of the first three factors became significantly more important when those who remained in the geographical area were compared with those who moved or started to study. The findings support the idea that job satisfaction indirectly influences nurses turnover. However, it also points to the fact that what increases job satisfaction in nursing may need further research. Psychological burden for instance has not been taken into consideration before. In order to increase job satisfaction, thereby reducing nurse turnover, influence and recognition, lessening of the psychological burden and individually planned work schedules seem to be the most important factors.

Patients who repeatedly seek care directly at hospital based somatic emergency departments take up a large proportion of health care resources, at the same time theyappear toexperience low satisfaction withthe care they receive The purposes of this pilot study were to describe: I) the development of a team model for taking care of frequent visitors to a somatic hospital based ED; II) Eventual changes, over six months, in costs and patients’ health care utilization related to pilot testing the model and III), the team’s experiences of implementing the model. A mixed method convergent parallel design was used. The development of the model began as a top-down process and later on in the process into a bottom-up approach oncethe inter-professional team became involved. The new model functioned as a support for all 12 patients included in the study and collectively their visits decreased by a total of 55%. The inference quality description is that such a management induced project may be accepted and actively applied when those involved experience freedom to structure the project. The freedom of being able to structure the model led to steps being taken that were beyond the project’s original limitations.

30.

Persson, Lena

et al.

Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna.

Jakobsson, Liselotte

Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna.

Background: In 2006 a Swedish network was established for PhDs with backgrounds in nursing and other health care sciences active in cancer care research. One of the main aims of the multiprofessional network is to initiate multicentre studies in this field. The issue of where the front line in cancer caring sciences is has been raised within the network as well as from funding agencies. One step towards identifying the front line is to seek opinions about research priorities among health care professionals. Since 1981 the Oncology Nursing Society (ONS) in USA, has conducted surveys about research priorities among cancer nurses. These studies have been of guidance for allocating resources to areas in need of more research. The aim of this study was to investigate research priorities for cancer caring sciences from Swedish health care professionals’ point of view.

Materials andmethod: A convenience sample of 19 PhD-prepared professionals in cancer caring sciences and 40 nurses working in cancer care participated. A questionnaire consisting of 115 potential research topics from the ONS study was translated into Swedish. The Swedish version is composed of a verbal category scale with four response alternatives to grade the importance of each topic. The topics can be divided into seven areas; cancer symptom management, behavioural/psychosocial aspects, health services, cancer continuum of care, health promotion/prevention, special populations and communication/decision making.

Results: The top 10 topics as rated by the respondents were evidence-based practice, palliative care, curative treatment/care, caregiver role, children/adolescents, quality of life, prevention of cancer, fatigue and patient outcome of cancer care. The two most important areas were cancer continuum of care and communication/decision making whereas the least important area was special cancer populations. The PhD-group rated significantly nursing workforce issues (p<0.01) less important and functional status changes (p<0.05) and rehabilitation (p<0.05) more important than did the nurses. The top 20 research priorities in the Swedish sample included 13 of the top 20 topics in the ONS study.

Conclusion: This study is a first step towards exploring the front line in oncology caring sciences by establishing research priorities as viewed by researchers and cancer nurses. The next challenge will be to ask patients and their families about their opinions of research priorities in cancer care.

The purpose of this study was to investigate quality of life and sense of coherence for acute leukaemia and malignant lymphoma patients at the start of treatment and throughout two years. A further purpose was to compare questionnaire responses with patients’ statements in open-ended interviews. A consecutive sample of 16 patients responded to the Quality of Life Questionnaire (QLQ C-30), Lund Gerontological Centre questionnaire and the Sense of Coherence Scale at the start of treatment and after 12 and 24 months. The QLQ C-30 questionnaire was administered after 4, 8, 16 and 20 months. Tape-recorded open-ended interviews were conducted every four months before the patients responded to the questionnaires. Quality of life and sense of coherence were higher scored at the start of treatment for patients without relapse, than for those with relapse. The recovery pattern, however, throughout the two years was similar for both relapsers and non-relapsers, thus the former had not recovered to the same extent as the latter. Relapsers may have had different prerequisites or a worse position at the debut of the disease and reasonably they need more compensatory nursing care. The long lasting nature of the disease makes it important not to withdraw the nursing care too soon after remission, and to develop strategies to empower the patients in handling the consequences of the disease and treatment.

Individuals (n=18) in remission from acute leukemia or highly malignant lymphoma were asked to narrate their lived experience of falling ill, of being under treatment and life following this event. The transcribed texts were analyzed from a phenomenological-hermeneutic perspective, expanded by their medical and social history as related in interviews. The analysis revealed three themes: (1) Believed in life, fought for it and came through stronger, (2) Life went on, adapted and found a balance in the new life, (3) Life was over, felt out of control and lost belief in life. Participants in the first two groups viewed their quality of life as improved and stated that the struggle had been meaningful and that the experience had made them grow, as a person, related to the experience of gaining new insight or strength. The third group of survivors viewed their quality of life as decreased. They found no meaning in their experience and evaluated the situation with bitterness. To help people retell their experiences may be one way of processing the experience of the disease and treatment and to regain a balance in life.

Five acute leukaemia or high malignant lymphoma patients at a hospital in southern Sweden were interviewed about their daily living problems, their coping strategies and their opinions about the nursing care they received during the active phase of their treatment. In addition the EORTC QLQ-C30, the Global Life Quality and the Sense of Coherence scales were administered. The data were analysed from a hermeneutic phenomenological perspective and interpreted to indicate that the patients sensed a threat to their lives, loss of control and having to live in uncertainty stemming from the disease and the treatment. They had problems with such things as fatigue, diarrhoea, nausea and vomiting, loss of appetite, sore mouth, and high temperature. However they seemed to minimise the importance of these problems and instead focused on gaining control of the situation, developing their knowledge of the disease and relying on the support of their family. Contradictions appeared in their statements about the quality of care; the information given was said to be good but difficult to understand, though the quality of the nursing care was judged to be high it had to be asked for i.e. help was received on request. In conclusion the entire situation of the patients perspective of both from the family and the nurses, needs to be studied in further research in order to fully understand the patients´ coping strategies and how nursing care can support them.

Fifty-four former patients, in remission after acute leukaemia or highly malignant lymphoma, responded to a questionnaire covering physical problems, view of help received, who was most helpful during the treatment phase, and the impact of the disease and treatment on their current life. Energy loss and nutritional problems were most troublesome during the treatment phase, signifying many other physical problems. Patients with acute leukaemia had more problems, and thought the care was worse than did patients with highly malignant lymphoma. Serious physical problems correlated with low satisfaction with practical help received, indicating that the nurses failed to meet the needs of those suffering the most. Reduced psychological and sexual energy persisted in remission, showed no correlation with the extent of physical problems during the treatment phase, but correlated with current existential problems and sensitivity to infections, with a great need for intimate help and counselling and with a low Sense of Coherence. Family relationships were said to have improved, while work and finances were negatively affected. The results indicate that nursing care should actively focus physical problems, especially the energy loss and nutritional problems. The overwhelming fatigue hinders the patient to take care of physical aspects for her/him self, and may be overlooked by nurses since their motor capability seem intact. The long term effect of the illness means reduced psychological and sexual energy and high degree of existential problems and sensitivity to infections, which indicates the importance of follow-up care and perhaps especially for counselling for the long-term reactions with disturbed equilibrium.

Nine spouses of people who had suffered from acute leukaemia or highly malignant lymphoma were interviewed about their experiences of everyday life throughout their partner’s illness and treatment, and their view of the professional care provided. The transcribed texts were subjected to phenomenological-hermeneutic analysis. The spouses felt they were in a situation of overall severe crisis i.e. experiencing feelings of distress, restrictions and limited or lack of support. The analysis revealed three family types: the couple acting as a unit, the couple acting independently on equal terms, and the couple acting separately with the spouse in a subordinate position. The spouses´ evaluation of the entire experience varied according to the family type and the spouses´ personal resources, which influenced the availability and utilization of their social network and the support of health care staff. Contentment was related to the couple acting as a unit or the couple acting independently on equal terms and taking control over the situation, actively asking for support and requiring the staff to meet their needs. Discontentment was related to subordination of the spouse to the partner or to health care staff, and failure to obtain support within the couple or from others. Empowering the spouses may mean helping them develop their skills, providing opportunities and authority and gaining access to resources based on knowledge of the family type, the consent of the partner and the spouses´ freedom to make choices. This may well lead to increased efficiency and have positive effects for the patients, the spouses and for them both as a couple.